Advocacy

Perceptions Are Everything

Is it possible that being stuck with fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS) just isn’t the “in” thing? These conditions aren’t popular in the media, and the government funds precious little research on them. Maybe you would be better off with male pattern baldness or impotency instead of fibromyalgia. In most major cities there are ad campaigns looking for research participants for these more popular disorders, with the added perk that if you become a study participant you will get all of your medications free for the next six months … what a deal! No one offers people with fibromyalgia free care without any strings attached, do they?

The roadblocks that you face are those of false perceptions. First, there is the common problem that you look fine but feel terrible. Every patient faces the task of explaining this predicament to others: some get it and some don’t. But looking good while feeling lousy doesn’t conjure up that award-winning picture on the front cover of your local newspaper.

Your second problem has to do with how your pain is perceived. Most people, even health care professionals, tend to be more believing of your pain if you have a visible injury or disease (e.g., swollen joint). For fibromyalgia, this isn’t possible, so you might not get the level of understanding you are looking for … and for that matter, what you deserve. In the January 1998 issue of the Fibromyalgia Network Journal, we addressed the fact that fibromyalgia pain does exist in the absence of observable tissue injury or disease. Of course, you already know that, but it seems to be everyone else’s perceptions that count the most!

How do you fight back against the twisted perceptions that cling to fibromyalgia? The Lupus Foundation of American recently launched a bold campaign implying that because lupus strikes mostly women, it is largely being ignored, both by the media and by the federal government that supports research. Kudos to the Lupus Foundation for saying what many patients with fibromyalgia think about how they are often perceived.

If the lupus folks are right, then how could gender be playing a role in the way research dollars are allocated? Take a look at Congress. These are the people who appropriate the money for government-funded research. If you watch the hearings on C-SPAN and squint to see all the faces, you won’t locate many females (other than the occasional court reporter). But just because Congress is male-dominated, it doesn’t mean that they would ignore women’s health issues, would they? Until Vivian Pinn, M.D., wrote the Women’s Health Initiative in 1990, The National Institutes of Health (NIH) was spending less than 10% of its allocated money on women’s health-related conditions. Dr. Pinn has substantially changed the face of research at NIH, but under the surface, one must remember that the makeup of both the NIH and Congress may not have changed substantially. Their perceptions about fibromyalgia (and those of lupus) could be outdated and a reality check might prove helpful for 1998.

Congress: Do predominantly “male” conditions fair as poorly as fibromyalgia?

Call and write your two U.S. senators and your person in the House of Representatives. Don’t let them ignore you, because that is exactly what they will do if you don’t contact them. Directions on how to get in touch with them can be found on the side insert. Here’s your pitch: You (or someone you love) has FMS; it affects five million Americans (2% of the population, mostly women), and this is documented in the January 1995 issue of Arthritis & Rheumatism. A study in the June 1997 issue of Journal of Rheumatology indicated that 26% of patients surveyed were on disability, yet the National Institutes of Health is spending less than two million dollars per year on fibromyalgia. That equates to less than 50 cents per patient per year for research on a life-impacting medical condition!

Is there a more prevalent, more disabling medical disorder that afflicts mostly men for which the NIH spends less dollars per patient?

You would appreciate a response to this question. In particular, you would like to know what Elias Zerhouni, M.D., the director of NIH, has to say about this matter. And, if there appears to be a gender bias in research, you would like this situation investigated. You would also like to know what both NIAMS and NINDS plan to do for stepping up their research efforts in fibromyalgia syndrome. Provide your name, address, and phone number on all letters. Always write and continue with follow-up calls until you are satisfied.

For those who may not know, NIAMS is the traditional home of fibromyalgia research. Dr. Katz took over the directorship August 1995, and since that time the funding for fibromyalgia research has not improved, although the overall allocations to NIAMS has gone up 6% each year. Dr. Katz needs to be asked: Why isn’t NIAMS working to improve fibromyalgia research?

The National Institute of Neurological Disorders and Strokes (NINDS)
Director: Story C. Landis, Ph.D.

NINDS is relunctant to spend a penny on fibromyalgia, yet they are the largest sponsor of pain research at NIH. Given that fibromyalgia is one of the most prevalent chronic central nervous system pain disorders around, Dr. Landis needs to be asked: Why isn’t NINDS making fibromyalgia syndrome a priority? … it doesn’t have to be number one, but fibromyalgia should exist in the NINDS project list.

In the past, NINDS has sent form letters to patients, saying that NIAMS is responsible for funding fibromyalgia research, not them. Not so! NINDS is just trying to pass the buck. They are responsible for central nervous system-related research at NIH and with the recent findings of central nervous system abnormalities in this condition, NINDS can no longer skirt their responsibilities in the area of fibromyalgia research by simply pointing their finger at NIAMS.

Remember, you have a voice! Make yourself be heard. Use the address, phone, and fax numbers listed below to contact the directors of these institutes.

Contacting Your Representative and Your Two U.S. Senators:

Look in your phone book under United States Government, or

Call the Capital Hill Switchboard at (202) 224-3121 for their Washington phone number, or

Look your Senator or Representative up online, or

Use the following two generic addresses:The Honorable (name of Representative)
U.S. House of Representatives
Washington, DC 20515orThe Honorable (name of Senator)
U.S. Senate
Washington, DC 20510

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